Welcome to the World of EDS: Tips & Tricks for the Newly Diagnosed

Jessica Adelman, the social media and communications manager for the Ehlers-Danlos Society, introduces the webinar and its presenter, Maggie Buckley. Maggie is a long-time volunteer patient advocate living with Ehlers-Danlos Syndrome (EDS) and is involved with various organizations. The webinar format is explained, with a Q&A session to follow the presentation. Maggie's extensive experience and personal impact on Jessica's life are highlighted.

Maggie provides an overview of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD), explaining the process of diagnosis and the genetic testing involved. She discusses the subtypes of EDS, the ongoing research, and the importance of accurate diagnosis. The challenges of finding a knowledgeable doctor and the need for patient advocacy are also covered.

The paragraph discusses the complexity of diagnosing EDS due to its varying symptoms and the rarity of the condition. It emphasizes the importance of finding a doctor who is willing to research and experiment with the patient. The author suggests ways to approach doctors, including contacting them to gauge their familiarity with EDS and discussing expectations.

This section offers advice on how to prepare for medical appointments, including keeping a symptom diary, maintaining an updated list of medications, and creating a one-page medical history summary. It also suggests preparing a list of top concerns, managing expectations, and scheduling follow-up appointments.

The importance of understanding anatomy and developing communication skills to describe medical issues effectively are emphasized. The author recommends learning the names of body parts and using resources like Crash Course on YouTube or Grey's Anatomy book for better communication with healthcare providers.

Maggie discusses the role of diet and lifestyle in managing EDS and HSD. She advises experimenting with food and water, avoiding processed foods, artificial sweeteners, and limiting carbonated, caffeinated, and alcoholic drinks. The impact of these elements on gastrointestinal issues is also covered.

The paragraph focuses on the importance of movement and exercise for individuals with EDS and HSD. It discusses the need to redefine exercise, start with low resistance and small increments, and work with professionals to customize routines. The risks of deconditioning and the necessity of listening to one's body are highlighted.

The author emphasizes the significance of appropriate footwear for those with EDS and HSD, noting that many experience foot issues that require support. The paragraph discusses the need to avoid certain types of shoes, like flip-flops, and the benefits of changing shoes throughout the day to redistribute pressure points.

Sleep is presented as a critical component of health and management for EDS and HSD. Tips for improving sleep hygiene are provided, including creating a dedicated sleeping space, establishing a sleep schedule, and managing expectations about sleep patterns. The impact of lifestyle choices like smoking and alcohol consumption on sleep quality is also discussed.

The importance of assembling a care team for individuals with chronic conditions is discussed. This includes healthcare providers, caregivers, support networks, and even pets. The author encourages open communication with providers through patient portals and maintaining a positive emotional climate through self-care and social interaction.

The role of the emergency department in managing acute symptoms of EDS and HSD is clarified, with advice on setting realistic expectations and knowing when to seek emergency care. The importance of being prepared with a medical summary and having a support person is emphasized.

Maggie addresses questions about the hesitancy of doctors to diagnose children with EDS and the possibility of having the condition without a family history. She explains the variability in symptom presentation and the importance of managing symptoms and injuries as they occur.

The paragraph deals with the approach to discussing EDS with family members who may be unreceptive to the idea of having the condition. It suggests providing information without pushing for a diagnosis and allowing family members to come to terms with the information at their own pace.